I think I over did it : FSGS Sucks

Today was day 1 of Joacim not being here, and I'm EXHAUSTED.

I got to sleep in a bit, but it's been pretty non-stop since then. Izzy and I took the dogs on a long walk around the pond after breakfast, and then it was off to run some errands.

I had ordered some prescriptions last night, and CVS called to tell me that they didn't have any of the phosphorus binder. I was completely out, and this is one I don't want to miss, so we had to to go a CVS in Eden Prarie first, then back to the one in Chanhassen to pick up the other 3. After that, we went to Home Depot to get some paint and furniture sliders, but ended up getting sucked into the Christmas aisle, which is never cheap. And finally a trip to the grocery store. On a Saturday. Before Thanksgiving. Let's just say it was busy and leave it at that.

When we got home, Izzy wanted to watch "Brave" again, so while she did that, I put the groceries away and did the dishes. I took a break and watched the end of the movie with her.

I had to empty the liquor cabinet because I needed to move it in order to put up the Christmas tree. Thankfully izzy was there to help slide the casters under it while I lifted the best. Can I tell you that those furniture sliders are AMAZING? I got it moved, then had to put all the liquor back, and then we were hungry so I made us something to eat.

By this point, I was pooped, but I knew I HAD to get the tree up, so I powered through it. My arms were getting really tired at the end, but it's up. Hopefully tomorrow I'll get the lights on. I brought the rest of the decorations up, vacuumed the floor to sweep up all the fake pint needles, and then it was time to walk the dogs again. I have to latch Rosie's leash to Izzy's stroller, and this time she ended up tipping it over, so that was a bit scary but Izzy's just fine. Back home. Unpacked a few little Christmas trees,and then pretty much collapsed in the sofa. At this point, I can't even raise my arms, so I just sat and got sucked into a chick flick. Izzy and I colored a little bit, had a snack, and then she turned awful. Screaming at the top of her lungs, kicking...you name it. I sent her to her room to calm her down, which thankfully worked, but it just magnifies things when she turns like that.

I wanted to soak in the tub after all of this, and izzy was in there with me, but it was the farthest thing from relaxing. Near the end she started screaming again, for no apparent reason. I was done with all of this screaming, so I got out. She, of course wouldn't, but I did and then turned the light out on her. Then she absolutely lost it. To cut it short, I got her out of the tub, put her jammies on and sent her to bed. I'm praying that it was just sheer over-tiredness that brought this all out. Fingers crossed for tomorrow.

I was going to do my friends newborn photos tomorrow, but I had to reschedule because I've got work to do in order to prepare for a 7:30am meeting on Monday. I'm not sure how the hell I'm going to get myself and izzy ready AND walk the dogs AND make it to the other side of the city by 7:30, but I'll have to figure it out I guess.

This was probably on of the whinier posts...sorry about that. Just had to get it off my chest. Tomorrow promises to be much of the same, so hopefully Izzy will take a nap early to avoid the tantrums. At least the weathers nice...mid 50's today. I think snow would've completely broken me todaynight all.

It's been a bit... : FSGS Sucks

It's been a bit since I posted here....thought I'd "pop" in...

Things are going OK.  I finally feel like I'm getting the hang of my job, which is super-helpful but also super-stressful.  I'm not sure how I'm going to do it all, but I seriously can't even think about being sick while I'm working, as there are a gazillion things to do.

Maybe all of this, in the grand scheme of things, is what keeps me going.  I have a lot of people asking me how I manage to work and have this disease, as I've mentioned several times, and I don't have a great answer.  I just know that I actually enjoy working.  And, quite honestly, am so worried about things falling apart if I quit "moving forward" that I never contemplate it.  For as long as I'm able, I'll keep pushing (with breaks every now and then).

The itchy skin isn't getting any better.  DRIVING.  ME.  BATTY.

Can't get my INR stabilized.  I swear they probably don't think I'm taking my medicine, but I am.  My nutritional intake has been ALL OVER THE PLACE lately.  I'm nauseous a lot of the time, and now I've got this moral complex about eating meat so I don't.  I'm pretty sure I'm not getting enough, nutritionally, but I'm trying my best.  A steak never looked like a cow before, but now that's all I see.  And meat just doesn't taste like meat.  It's either my subconscious trying to help me figure out this moral dilemma I feel, or CKD.  I read a little about the stages of CKD, as someone on the Facebook group was asking.  I'm right between Stage 3 and 4, and here are some of the common symptoms (courtesy of Davita.com):

• Fatigue: Feeling tired is common for people with CKD and is often caused by anemia.  EVERY FREAKING DAY.....
• Too much fluid: The kidneys may lose their ability to control how much fluid stays in the body. A person may notice swelling (edema) in their lower legs, hands or face around the eyes. With too much fluid someone, could even feel short of breath.   YOU'VE READ MY POSTS, RIGHT?  SEEN MY PICS?  ENOUGH SAID.
• Urination changes: Urine may be foamy if there is protein in it, or dark orange, brown, tea colored or red if it contains blood. A person may urinate more or less than normal, or get up at night to go to the bathroom.  I'M NOT EVEN SURE I'D URINATE IF I WEREN'T ON DIURETICS....
• Kidney pain: Most people with CKD do not have kidney pain, but with some kinds of kidney problems, such as polycystic kidney disease (PKD) or infections, they may have pain in their back where the kidneys are located.  NOPE, NO KIDNEY PAIN, BUT A PIA SCIATIC..
• Sleep problems: Some people have trouble falling asleep or staying asleep. Itching, muscle cramps or restless legs can keep them awake.  THIS ONE IS THE MOST TROUBLESOME RIGHT NOW...A NIGHT OF NO SLEEP TAKES DAYS TO RECOVER FROM
• Nausea: Vomiting or feeling nauseated may occur with CKD.  OCCASIONAL NAUSEA, BUT NO VOMITING
• Taste changes: Food may not taste like it usually does, or may have a metallic taste.  YES!!!!!!
• Uremic breath: As urea builds up in the blood, it may be detected in the breathing causing bad breath.  PROBABLY :)
• Loss of appetite: People in this stage may not feel like eating, and some people report having a metallic taste in their mouth or bad breath.  COULDN'T HAVE SAID IT BETTER MYSELF
• Difficulty in concentrating: Having trouble balancing a checkbook or focusing on reading the newspaper can happen with CKD.  I DON'T REMEMBER ORDERING A RUG ONLINE THE OTHER NIGHT...COMPLETE BLACKOUT
• Nerve problems: Numbness or tingling in your toes or fingers is a symptom of CKD.  THIS ONE IS JUST PLAIN ANNOYING.  TINGLY FINGERS AND TOES SUCK.  AND IT MAKES IT A LOT HARDER TO TELL IF WATER IS HOT OR NOT

Here's a link to more about Stage 4 Kidney Disease.  Read at your own risk :)

Other than that, life is chugging along.  Joacim is leaving for Sweden tomorrow, which terrifies me because I'm afraid I'll get sick and not be able to properly care for Izzy.  That and she's just plain exhausting right now.  NEVER.  STOPS.  TALKING.  She and I are planning on making the 11 hour drive back to Indiana over Thanksgiving to see the fam.  This is a drive I'm DREADING, but it'll be good to see family and friends again.  At least Izzy will keep me awake with her singing :)

And I'm putting my Christmas tree up this weekend.  Yes, I'm one of those.  I have a fake tree, and I'm happy about it....this way, I get to enjoy it longer (which is totally worth it considering the effort you put in to decorating for Christmas, don't you think?).

Okay, gotta go.  Rosie's at the door, growling at a shadow :)  Take care!